everything I read suggests PMR but doctor says the markers do not show it in blood tests. The pain in my hands and shoulders is extreme..I get frailer daily. My hands are also very hot. I look and feel like a person much older...I struggle to dress etc I am 61 this has gone on for 6 weeks. The GP is concerned that my red platelets were low...have been 30 but now 40ish...now says perhaps I was born with a low count.....please help me...I am paying to see a private specialist but feel so bad............advice
My doctor said that 40 % of people who suffer from polymyalgia don't have raised esr's. Go to the specialist and I bet your doctor will pay attention to the specialist's advice Hope you feel better soon.
Did your doctor have any other explanation for your debilitating pain and run further tests to rule out other possibilities? Hopefully the specialist will look at everything carefully and you'll get a diagnosis soon. Please let us know how things go. All the best.
Your GP needs to get up to speed - in about 1 in 5 patients with PMR their blood markers are "within normal range". I had the same problem for 5 years, eventually working out for myself what i had - and despite a textbook response to 15mg pred in 6 hours the rheumy I saw was still not convinced. Luckily another gP in the practice to the one I normally saw did agree and provided the requisite prescriptions for pred. The doctors I have seen here in Italy have never disputed my PMR.
I still don't know what you mean by "red platelets", there is no such thing. Do you mean red blood cells? Anaemia is one of the symptoms of most autoimmune disease, including PMR.
You sound like me when I was first diagnosed, 2 weeks before last Christmas.
I started swimming in a public heated pool. Only a couple of times a week. Slow swimming, and floating and relaxing. Kept up the 15mg of Pred. Went to see the Rheumatologist yesterday and told him that the only pain I have is in my left shoulder when I am dressing. He said reduce down to 10mg tomorrow and then down by 1mg a month after that.
I hope your pain subsides and you get relief. I also took Iprubrofen, Paracetamol when required.
I saw several specialists and the first was a rheumatologist and she also said I didn't have PMR based on a blood test. It was the SECOND Muscular Neurologist who told me I needed a muscle biopsy to diagnose PMR, which he scheduled immediately. He put me on prednisone right after the surgery and my symptoms began to disappear almost overnight. The fact that prednisone worked also pointed to me having the correct diagnosis. Btw, the first Muscular Neurologist told my GP that he thought I was nuts. It's now been four years and I'm doing better than ever on 5 mgs of prednisone. Good luck.
They were both wrong. Just because the blood markers are normal is only one point - and a muscle biopsy does NOT show PMR. If it did they'd do it more often and it is an unpleasant test. What it DOES do is differentiate between PMR and another illness where the muscles are damaged. But it is also shown up by a blood test of a muscle enzyme called creatine kinase.
I hope you complained about the first neurologist!!!!
Hi Jean, I don't know if you know but pred and Ibuprofen are contra indicative. My GP said I should not take Ibuprofen. In fact it will not help PMR anyway.
thankyou for your support....my hands are red hot and my left is now clawed...lots of heat packs help but I can only slowly unbend fingers occasionally. On a full blood count the red cells ...level should be 150..mine were 30...has slowly gone up to 43 over the last couple of weeks. GP still not particularly bothered...only because I have insisted to talk about PMR has he had another blood test ordered...I am seeing different GP on Friday am. Lots of little bruises...referral to haemotologist is a 26 week wait,,,and that is urgent. Am paying to see rheumatogist ( excuse spelling) this is for the 11th of April. I feel very, very down
My granddaughter has something that right now is being considered a virus but her platelets were very very low. And at the time that it was discovered she would bruise at the slightest touch. They put her in the hospital and gave her a booster of platelets and then waited to see if she was able to keep that amount up. Then they let her go home. That was several months ago and she gets her platelets tested weekly. Her platelets are supposed to be in the 300,000 but her platelets so far are typically in the 30,000 to 40,000 range. As I was saying earlier at this time they're considering it a virus I cannot remember the name of the virus and that is where my frustration comes from. The bad news is that anytime they can determine that rather than it being a virus if her platelet start dropping and not continue to climb they may decide it is leukemia. Now she is 5 years old which is considerably younger than you of course. And that might very well make the difference.
Urgent just means a few weeks sonner than routine. If you really need a patient seen quickly it is an emergency and has been that way for the last 10 years at least. Unfortunately - it seems to have passed over a lot of GPs heads!
I'm not surprised you feel down - you must feel quite unwell and I get the impression you don't have a particulalry good GP at present. I do hope the other one is better.
Sending positive thoughts to you and your family.
blood score is now 44.......doctors surgery phoned to give result and to say the Dr says have another test in a months time. The receptionist queried if I still need an appointment on Friday morning...I asked what were the ESR score...she said she did not know as the Doctor had not noted it...explained the pain in my hands and said of course I need to see him...they think I can wait until April 11th to the see the specialist that I am paying for as a private consultation.....the pain in my fingers, thumbs and shoulders is bad, almost impossible to dress, need help with buttons and cannot drive.... I am still getting small bruises...........how bad do you have to be?? because this is the worst pain I have ever had in my life but perhaps my perception of this is not right as until now I have been very fortunate in my good health...perhaps I am whining and should be braver Do hot packs help....I try putting heat under my fingers and then try to put a roll of cloth under the fingers to try to straighten them....very painul as it is less painful to keep them curled under...any advice
No, you are not whining. You should not need to be "brave" when calling for help from medical people - it's their job to help you. Had you considered rheumatoid arthritis as a possible diagnosis? I believe those hot stiff joints are a symptom, as is easy bruising. Hopefully the specialist will check everything and you'll get a diagnosis and correct treatment very soon.
I have to say - the bruises would concern me a bit - have you told your doctor about them?
thankyou...I feel so supported...will let the community know how I get on after April 11th
he saw them and said that they were small but to let him know if I had a lot more. He said that my low score was possibly that I just had low levels???I am seeing a different doctor on friday and I have a list of questions that need answers....thankyou for replying
update
My reds are 44..up from 30. He was not concerned as it is my age. My ESR is 33 but because of my age 60..so .this is not a concern. The doctor told me to open nmy fingers...my claw and when I couldn't did so for me...did not get far because i creamed and then cried. Told me that it was probably arthritus and I could use painkillers from the pharmacy....but eventually wrote a prescription for 500mg c0-codamol, Lamsoprazole and Naproxen 500mg
I will look to my diet, excercise and pay to see a specialist Rheumy....I was made to feel a fraud but it is really painful...shoulders, thighs stiff...cannot go up stairs easily...I am sorry to fuss
Hi Mary,
Your last 4 lines describe my symptoms exactly....you have PMR
Lyrics for your hands , takes 2 weeks to work. Tramadol for the pain and Paracetamol . Prednisone for your PMR. I Promise you will get better.....takes a few weeks.
I started off taking ages to get out go bed, walked sideways down the stairs, couldn't shower without help, couldn't do up my bra. Walked differently, lost 6 kgs, lots of pain..
7 weeks later can run up and down the stairs, playing bowls, putting on weight......NO PAIN......on 10mg Pred, no pain killers and 10mg Endep.
tapering Prednisone by 1 mg per month
good luck xx